Mild Cognitive Impairment (MCI) Guidance Requested

MCI Partner

I would very much like to connect with anyone that is currently living with a spouse or domestic partner (I am a domestic partner) that has been diagnosed with MCI recently or within the last couple of years. My partner has always been a strong independent woman and due to past relationships especially her ex-husband, she has significant trust issues. She tends to not trust that people who are well intentioned, or say that they want to provide help will actually follow through, and that they are only saying things to appear to be kind and compassionate.  

I know that we both know that we love each other deeply. We have known each other since HS and only reconnected 4 years ago, living together for 3 years this coming June, and the last 4 years have been the best of any loving partner relationship either of us has ever had. 

With her trust issues also comes her feeling that she will become a burden to me, and has said that I did not sign up for this, and she wouldn't blame me if when she starts to decline, that I will choose to leave. No matter how many times I state how much I love her and that I am not going anywhere, she comes back with, "Well that could change when we're in the thick of her disease". Then I reply, "I'm not going anywhere"!

Additionally, she doesn't want anyone to know other than her two daughters. She has become close with my daughters (especially one who works with her) and my family. My family are the most supportive people I know, but she feels that anyone that knows about her disease will look at her differently and treat her differently. 

I have shared with her, that if we tell my family there reaction will be, whatever you both need at anytime, all you need to do is ask, and we will be there for you. That's my family, my kids, my sister and her husband and my niece and nephews. 

Also, by shutting out my family who I am very close with, who do I get to talk with if I need a lift or just need an ear to bend?

Any guidance or recommendations would be helpful. Many thanks!

Ed1937

Partner, welcome to the forum. Sorry you have reason to be here, but we have a lot of compassionate people here willing to help and share ideas with you.

My wife does not know she has dementia, and  our large family has kept it a secret from her, even though many others know about it. If your SO does progress, don't be surprised if people, including family, keep their distance. Most people have good intentions, but it becomes uncomfortable for others to get close to the problem. 

One thing you should not do is to promise her that she will never go to a nursing home or other living facility. It's fine to tell her that you will always do whatever you can for her, but the time may come that you will have no choice about keeping her home. Then if you made that promise, that will complicate things big time.

Also be aware that many people who have cognitive problems do not have the ability to realize they  have a problem. This is called anosognosia, and you should become familiar with it.

I wish you both luck. Has she been through all the testing to rule out all conditions that could mimic dementia?

PlentyQuiet

Hello, 

We are in a similar situation, but handling it differently. DH is 61 and was diagnosed with MCI September 2021, had a lumbar puncture done and was diagnosed with EOAD November 2021. 

This firm diagnosis was useful in getting Social Security Disability. It took only 5 weeks from application to approval. It has eased some of the money worries for now. 

We have told our young adult children, and DH's adult child from a prior marriage. We have also told siblings, neighbors and friends. 

DH has been receiving amazing amounts of support by letting his situation be know, especially since he is in the early stages and is able to be mostly himself. 

The secondary impact of letting the world know is that I have been getting support. This forum is a great source, but also more people are starting to acknowledge the struggles I am and will face. 

This is mostly because I have the freedom to speak openly about it to others now. In the beginning DH did not want anyone else to know either. But with some encouragement he started telling his closest family and friends, and the positive experiences have made it a more normal thing for him to do. The more people that know what is going on means there are more people who will interact with DH with pointing out gaps in speech or thought, and who will smooth over bumpy conversational patches. 

This may, and probably will, change as DH advances and people start to drop off. But by that time DH hopefully won't realize it so I just don't mention it. 

Encourage her to be open about what has happened to her, you, and your family. 

Rescue mom

Just be prepared for things to change, and often when they change, others who deal with her may need to know. My DH with Alzheimer’s wasn’t diagnosed until he was into the disease, His behaviors and “conversations” were noticeably off. Nothing dramatic at first, just…off, not right.

I thought it was better people who dealt with him should know what was going on. Once they knew Alzheimer’s, they were unfailingly understanding and sympathetic. (I found out later there were rumors of day drinking, drugs etc. because of his earlier behaviors). 

I told family immediately after the Dx, however. Others, as needed. Nobody ever came up and said anything like “how’s your Alzheimer’s going,” they were more tactful than that. But he knew from the start, I’m of the belief that very few secrets stay secret. He just didn’t remember or understand what it meant.

Sadly, IME, when and if her behaviors change, people do disappear and change how the treat the PWD.  The PWD changes (nothing can be done about that) and the way others respond to them changes.There’s been so much written about that on this forum and heard in my support groups IRL. They all say they want to help, and they’ll probably be fine in a quick encounter, but when it comes down to anything involving much personal interaction, they don’t want to see or deal with it. Usually by that time, the PWDs changes also mean the PWD may not notice as much, and certainly can’t change to accommodate others’ comfort levels.

I strongly recommend finding a Alzheimer’s or dementia caregiver support group. Other caregivers are the only ones who “get it” from our position anyway, although family help has been crucial. Your local,Alzheimer’s Association can help you find support groups.

MCI Partner

Hello Plenty Quiet,

Thank you so much for your response. 

With us just learning of the diagnosis after significant testing, it is all still so new to her, so I know that I need to go slow while still gently encouraging her that others we are close to should know. 

I will also research articles etc to see if we can find documentation the encourages opening up about her MCI. That may help as well, and fi you're aware of any such writings, I'd be grateful for a point in the right direction.

Thank you again for sharing and for your suggestions.

CStrope

It is definitely hard to determine who to tell and when.  We live in a small rural community, where everybody's business seems to be everybody's business.  My husband was a high school teacher for 25 years, so anywhere we went we saw students, ex students, parents of students,....etc etc.  You get the picture.  I was reluctant to let anyone local know for fear that the news would get out.  At one point, my kids and I finally said this is not working, and we started openly telling people.  

It has helped so much.  Not feeling like I was living a lie, and trying to make his actions seem appropriate for outside situations.  I too have found that people don't say inappropriate things to my DH, but then again, a lot of people just don't say anything.  I have found that there are a lot of people that will avoid talking to us because they can't handle that DH is no longer who he once was.  Then every once in a while, someone that does know will go out of their way to make conversation with us in a caring and appropriate way.  Those occasions will mean so much to you.

Rescue mom

I also strongly second everything CStrope said..When somebody does make an effort to talk with DH in ways he can understand —which isn't easy—that means so much.

MCI Partner

Love this CStrope! Thanks so much for sharing!

dayn2nite2

I think you should do as much reading as possible in this forum, especially the posts describing paranoia, aggression, and behaviors along with incontinence of bowel and bladder.

I suggest reading these things and stop promising things to her about never leaving, don’t promise you’ll never seek placement.

This situation is a nightmare for those of us with relationships lasting decades, and it’s spiritual, physical and financial.  She is more right than wrong, and also her child or children currently have more legal standing here than you do.

Have you seen an attorney to attend to the legal aspects and financial aspects?  

toolbeltexpert

MCI Partner wrote:

I would very much like to connect with anyone that is currently living with a spouse or domestic partner (I am a domestic partner) that has been diagnosed with MCI recently or within the last couple of years. My partner has always been a strong independent woman and due to past relationships especially her ex-husband, she has significant trust issues. She tends to not trust that people who are well intentioned, or say that they want to provide help will actually follow through, and that they are only saying things to appear to be kind and compassionate.  

I know that we both know that we love each other deeply. We have known each other since HS and only reconnected 4 years ago, living together for 3 years this coming June, and the last 4 years have been the best of any loving partner relationship either of us has ever had. 

With her trust issues also comes her feeling that she will become a burden to me, and has said that I did not sign up for this, and she wouldn't blame me if when she starts to decline, that I will choose to leave. No matter how many times I state how much I love her and that I am not going anywhere, she comes back with, "Well that could change when we're in the thick of her disease". Then I reply, "I'm not going anywhere"!

Additionally, she doesn't want anyone to know other than her two daughters. She has become close with my daughters (especially one who works with her) and my family. My family are the most supportive people I know, but she feels that anyone that knows about her disease will look at her differently and treat her differently. 

I have shared with her, that if we tell my family there reaction will be, whatever you both need at anytime, all you need to do is ask, and we will be there for you. That's my family, my kids, my sister and her husband and my niece and nephews. 

Also, by shutting out my family who I am very close with, who do I get to talk with if I need a lift or just need an ear to bend?

Any guidance or recommendations would be helpful. Many thanks!

Mci partner the words you said about your partner not wanting to be a burden and giving the option to leave. My dw has said those words almost exactly, and your reply to partner could have been my words. All we can do is continue to express our love. I am glad you have such a supporting family. My dw is the same about others noticing and is withdrawing from social activities. It is so hard to feel like you never get any interaction with others. Keep posting as it is helpful to vent.

Ed1937

Partner, following is a link that explains MCI vs. dementia. It should be iseful to you. What's the difference between mild cognitive impairment and dementia 

And here is another link that might be useful, especially in the future, although it will give you an excellent start understanding dementia now. http://www.dementiacarestrategies.com/12_pt_Understanding_the_Dementia_Experience.pdf  

DJnAZ

I noticed a change in my wife about 2.5 years ago when she was 62, specifically her communication skills. Words weren't coming out correctly and her comments or responses to questions were at times off subject and other times just bizarre. About a year ago she was in the hospital due to a bad UTI and one of the doctors noticed she was unable to adequately describe her symptoms or respond to his questions.

This doctor brought in the hospital neurologist who ordered a MRI and CT scan that detected amyloid plaque. At that point she was officially diagnosed with Mild Cognitive Impairment. Over the past year her language and cognitive reasoning has deteriorated, yet by all appearances she appears completely normal. She is able to take care of herself and do many things around the house she has always done.

 The most difficulty I have is communicating with her. Getting an answer to any question, even a yes or no, is very difficult. Almost any question or comment to her is met with an uh-huh or OK.Same with friends, doctors or even wait staff in restaurants. Her short term memory has really suffered as well. She is adamant, however, that there is nothing wrong and she is "just fine". But I think she knows she has problems.

Neurologists have prescribed memantine and donepezil to try to slow down the progression. She took memantine for about two months and came up with the excuse that the drug was causing bladder pain and difficult urination. A urologist ran tests and suggesting this was very unlikely. Basically the same with donepezil. While the two meds may have had some positive results, she refused to take them.

I have secured an appointment with Barrow Neurological in Phoenix with the intention of having her thoroughly evaluated leading to recommended treatment options. Her mother and maternal grandmother both died of alzheimer's and while that probably sealed her fate, I want to know there is something, or perhaps nothing, that can be done to change the inevitable.

I'm sorry the best I can offer is a brief look into our story and how MCI has affected our lives.

Iris L.

MCI Partner wrote:

 She has become close with my daughters (especially one who works with her) and my family.

Is she still working? If so, this needs to be addressed soon.

Iris L.

MCI Partner

DJnAZ, 

I'm so sorry that your wife and you are going through this, and I thank you for sharing challenges. 

My SO has just started taking donepezil and we're hopeful it will help. We just received the diagnosis this past Monday and we have already started planning a new diet, exercise routines (we're buying a treadmill) and she already does yoga, and we are adding to our mental stimulation with games like WORDL, Scrabble, puzzles etc. My SO is determined to do what she can, and my plan is do it all with her including diet, so it becomes a normal part of our life and hopefully making her feel that she is not out on an island all alone.

The biggest challenge I face as her main face-to-face caregiver and supporter, is her current defiance of telling a small number of people that we are close with. I / we have a terrific support network of friends and family and I feel the need to speak with those closest to me that I know without a shadow of a doubt, will support us in silence when we need it, and also with their presence and encouragement when we need that.

I have read some good info online about letting people in, and I will gradually bring this to my SO as we move forward, realizing that this is all brand new to her / us, and I need to let her process this as she needs to. For me, I am seeking to work with a therapist / psychologist as well, so I can be the best version of myself for my SO!

MCI Partner

 She has become close with my daughters (especially one who works with her) and my family.

Is she still working? If so, this needs to be addressed soon.

Iris L.

Iris L,

She is still working and at this time she is doing well at work, in fact I believe her job is vital to her mental health, and with her just turning 60 in 2 months and starting meds and doing everything else she can to slow or delay the progression. We will be talking about this though.

Thanks!

DJnAZ

MCI Partner:

In my opinion you are doing exactly what needs to be done to help your SO, and you, deal with the disease. You are fortunate to have someone who is taking an active interest in meds as well as wanting to do any and every thing that may help. Exercise is extremely important so the treadmill is perfect.

I'm glad my story was helpful. It sounds like you guys have a good perspective and are taking the right steps. Don't hesitate to reach out any time. This forum is a good group with a lot of experience and insight. It is a valuable resource especially for those of us new to this insidious disease.

Newbernian

I think it is great your DW is still able to work and wants to.  I saw an article that said socialization is one of the most important things to keep the mind stimulated.  My DH does yard work around our neighborhood.  He is happy energetic.  Extremely fit.  People appreciate having someone who is willing to do chores they don't want to do or can't.  The little extra money helps us both financially and helps his wellbeing.

I thought of celebrities who revealed their diagnosis.  The first one that came to mind was Ronald Reagan.  Then Glen Campbell.  Then I realized Tony Bennett has revealed his diagnosis.  He performed in Radio City Music Hall to 2 sold out crowds with Lady Gaga.  I saw the concert and was amazed at his talent at his age, his 95th birthday.  It was so much more amazing to think of his diagnosis and his ability to still perform so well.

I did a search to see if I could find a copy of the show.  While looking for the show on You Tube, I came across a story on 60 Minutes about his preparing for his performance.  I am unable to share a link to that video.  It amazed me to see the backstory leading up to the Concert and the visit with him afterwards.  It is heartbreaking to watch but I learned a lot from it and the importance of keeping our Loved One's engaged in the things that made them happy.

The Video is called, "Despite His Alzheimer's Tony Bennett Prepares to Perform with Lady Gaga".  It was released on Oct 4, 2021.

 

jfkoc

The first thing I suggest is to watch the first link on Ed's post.

It is veery important to understand what MCI is.

The next thing I suggest is to review the testing done. It will be very helpful to know exactly what areas are affected.

Trust issues? I would listen to her fears...ad nauseum. They are very real to her. You might even seek some counceling on the issue.

Please understand your legal position. Discuss with your partner what she wants and then help her get her legal and financial affairs in order. Since everyone should do this do yours at the same time. Will, health directive, DPOA, trusts etc.  Best if you get help from a certified elder lawyer (nelf.org)

In closing I will suggest not borrowing trouble. You have no idea how slowly or what kind of a decline the journey holds. So when you read here please do not make any assumptions. Take things as they come.

Crushed

October 2010 DW was a physician holding the top advisory position in a federal agency.  No direct patient contact. She was 58 She was diagnosed as MCI of the amnesiac type.  She worked remotely so for about a year was able to  keep contributing ideas. She was on leave much of the time  and then negotiated to organize her papers for the National library of Medicine,  April 2012 was both her last day of  non leave "work"  and she was converted to EOAD  She was on sick or annual leave until September of 2013 when she retired on disability
She never drove after April 2012  and  I never left her alone.  

2012 -Sept 2017 I was her sole caretaker and we traveled extensively  She declined steady and began wandering and psychosis 

I was always the family cook and homemaker And slowly took over all other household and financial functions. We renovated the house for her in 2016

 She went into memory care in October 2017

 By October 2018 she had no idea who I was She is still there
 

Katcat

Hi

My husband was just diagnosed in august with MCI. They called it amnestic MCI. He’s not taking meds that were recommended. Bad side effects. He is still driving. Goes to gym every morning. But memory isn’t good. Paying bills becoming confusing. 

We will be married 30 years this August!

I’m happy to connect with you!

ElaineD

Dear Katkat:

My two sons (one a psychiatrist) began telling me 7 years ago that "dad is losing it".  'Dad' was 75 at the time, and his family has major history with vascular dementia...an older sister died last year at age 91 in Memory Care.

I just didn't see didn't see it.  What I DID see was a dramatic worsening in his 'personality'.  He had always been angry and critical, but he became much, much worse.  I really thought it was something about me (I was becoming disabled from an Immune problem).  I had to stop driving and he refused to take me to exercise, telling me 'he was too busy'.  In addition he spent almost NO time around me....working in the yard and staying in his basement workshop.

At the urging of my sons I began looking for a retirement community where life would be easier for me to navigate with my walker, and where there would be options if (or when?) my disabilities became worse.

When my husband realized that I was really going to move out, he cried and asked why I was leaving him.  He had always refused to consider leaving our house.  I just couldn't leave him, in the end.

We moved here 3 years ago, and the move showed me how his organizational skills had deteriorated.  I was shocked.

The best thing was that about a month after we moved, his personality changed again, and he has steadily become nicer than he has ever been in our almost 60 years of marriage.  Both sons spent three weeks with us in France (older son lives in France) in 2019, and noticed that 'dad is no longer angry all the time'.  It was that big a change!

However, spending more time with him now, and with his memory continuing to become worse, I now see on a daily basis that he cannot remember anything he needs to do.  He asks me repeatedly when his doctors' appointments are sometimes three times in an hour.  

He also cannot remember our trip to Germany in 2015, and his bizarre descriptions of how things happened, when he tells people about things in the past, just amaze me. I stay calm and just answer his questions and try not to correct him.  He will be 83 in May, I will be 80 in March.

I have always handled ALL the finances, so that is not an issue, thank goodness.  He can still drive (as I noted I have not been able to drive since 2016) and takes me to my many doctors' appointments.  

In fact, he is now more and more MY caretaker.  He is uncomplaining (no sighing and moaning as it would have been in the past) and does all the dishes, laundry, helps me with some dressing, and of course waiting for me while I am a doctor's office, sometimes 3 times in one week.

He has mentioned to his PCP that he has memory issues, (I can read the doctor's notes in his mychart) and he has even mentioned it to others, here.  So he knows.  He was a PhD research biologist, teaching and doing research at a Medical School in Boston, before he retired.  He knows what may lie ahead, but WE have never ever once discussed this.  

We live in Independent Living, but there are also Assisted Living and Memory Care facilities here.

I have tried to anticipate various future scenarios, of course.  I know one thing absolutely:  I will NOT be able to care for him physically (showers, toileting, feeding, incontinence) the way I read about here.   He will have to move to Assisted Living, which will trigger our Long Term Care Insurance.

I am in the process of getting a Power Chair because I am beginning to be too unsteady with my walker.   I really wouldn't even be able to manage 'wandering behavior' or any behavior that my cause him danger in our apartment.  I cannot be his Caretaker, and I will lose my Caretaker. 

We may have to move to Assisted Living together!

We are quite a pair, believe me.

But, I am by nature a positive person and I know it will all work out somehow.  

I know this is long winded, but it is therapeutic to for me to review my situation.

I am in awe of those who post here, and have followed this forum for three years.  This is the best place for answers, ideas, support, caring and sanity.

Best wishes, Katkat

Elaine

MCI Partner

Crushed- I appreciate you sharing your experience, and I am so sorry to hear about your DW. Happy to connect if you ever need to bend an ear.

MCI Partner

Katcat- Thank you for sharing. Will definitely connect with you.

elainejr

Elaine, from another Elaine. Your situation sounds like mine, husband has an mci diagnosis and memory is definitely in decline, functionally he is fine…..driving shopping (with a list), although I can tell something things take more explaining. He also stopped taking apricot because of horrible nightmares and insomnia. His mood is most always good…..I’m the one at wits end. Having or having hd anxiety and depression, he took care of lots for me, I’m afraid I don’t show the same patience.

Elaine

elainejr

LOl. I should have proofread better….typing on an iPad. My husband had been taking Aricept, not apricot.